When my son Arlo was only 10 weeks old, on Boxing Day 2007 he had his first twenty minute long tonic clonic seizure. Then the long and often very scary journey started. Arlo continued to have regular complex partial seizures until at 5 months he had another tonic clonic seizure which lasted more than 30 minutes.
For the next year and a half, he would go on to have many, many status seizures often lasting well over an hour and half. He was finally screened for SCN1a mutations at about a year but it took nearly 18 months for the results to come back positive and a further six months before he got the diagnosis of Dravet in April 2011.
One of the first things my husband and I did was to get in touch with Dravet UK and joined the Facebook forum. We were also invited to attend the annual Center Parcs trip. This small holiday changed our perceptions utterly. It was a shock to see what the future might hold, but we met the most wonderful group of people who, to put it simply, just understood!
Before I had Arlo, I had a very busy job working for a large Public Relations Agency and had spent the previous 15 years working in healthcare communication, helping pharmaceutical companies with their new drugs. I had even worked on a number of anti-epileptic drugs. I had planned to return to work after having my child, but maintaining a child with Dravet syndrome is full-time employment in itself. Given the amount of time Arlo was spending in hospital, it would have been impossible for me to return to my old work. This is why I am so excited to have the opportunity to use some of the skills I’ve accumulated to help raise awareness of Dravet syndrome and Dravet Syndrome UK.
Galia has held the position of Chair since October 2015.